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Family Advocacy Hero -- Ayden H.

Ayden was a happy, developmentally-normal, healthy 4-year-old, when his parents started to notice that his leg would kick out to the side when he walked and his hand had tremors. His parents took him to the hospital where doctors performed a muscle biopsy on his leg and a MRI scan of his brain. Ayden was diagnosed with Leigh’s Disease, an incurable mitochondrial disease.

Mitochondrial disease results when there is a defect that reduces the ability of the mitochondria, a specialized part of a cell responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth, to perform normally.

Despite not being able to walk or stand or to talk so people can understand him, Ayden is a very bright, happy boy who loves helping to take care of his little sister, Faith. He is still able to attend school, which he loves. Unfortunately, due to how his energy levels drop, he can’t go full time. Ayden and Faith have a full summer of exciting events planned. They will be playing baseball in a nearby league and vacationing in Florida. Ayden will also be in horse therapy as part of treatment to keep him able to play as long as possible.

Fact: Approximately two-thirds of all children with medical complexity are covered by Medicaid.